My Journey with Tiara, week 18

Tiara has been gaining weight steadily and is now officially obese. I am seriously contemplating starting a clothing line for obese children. I know that sounds weird, but if you have ever had an obese child you know how impossible it is to find clothes for them. Tiara will be 7 years old in October and she weighs over 100 pounds and wears a size 16 in children’s clothing. Like all mothers, I want my children to look cute and presentable which is really difficult when they are so overweight. It is so frustrating for both of us.

As I watch Tiara gain weight because of her insatiable appetite caused by the Depakote, I develop a new understanding and compassion for obese people. To be honest, I did not grow up in a family that had any compassion for anyone who was over weight, yet now my baby was obese. It is such a terrible cycle. She is starving, she eats, her stomach stretches, so she needs to eat more. She can’t walk without having an asthma attack or getting overheated so we get her a wheelchair. Now she is barely walking at all because she is being wheeled and getting less exercise, yet she is still hungry. And so it goes, until she can barely breath or function because she is so overweight and now she is miserable. She can’t do the stuff she did before like play basketball, run and play, so she eats more. People stare at her and me, like I am a bad mother and she is pathetic. They don’t understand and I know it , so as always, I ignore their stares. She craves chips, cheese, avocados, pizza and pasta. Could you get any more fattening? What can I do? Feed her carrot sticks? Always deny her of her favorites food after all she has suffered? It is such a struggle finding a good balance.

In the Spring, she she gets another pneumonia, but this time, as a result of the Adenovirus. In healthy children the Adenovirus usually presents itself as pink eye and mild respiratory problems. It is super common and spreads very easily, but in Tiara’s case it wasn’t so simple. She woke up with super bloodshot eyes that were so swollen, she could barely open them. She seemed to be having problems breathing so I rushed her to the doctors. He said she had another respiratory infection, but was very concerned so he sent us straight to CHOC. Like usual, once they saw Tiara’s medical history we were quickly called back and shown to a room. One of Tiara’s advantages is she has never waited over 10 minutes in any Emergency room. She can pretty much scare any intake nurse with her medical history, so she is seen right away. Once in a room, they did the normal blood tests, which are super impossible to get on her since she is so overweight and you can barely see her veins, did cultures to check for certain types of pneumonia causes and another chest x-ray. She was immediately put on oxygen and admitted to the hospital once the results came back showing a very serious pneumonia. They put her on IV antibiotics and I assumed this illness would follow the normal course as her past pneumonia’s. Oxygen, IV antibiotics, breathing treatments every 4 hours, a few days in the hospital and then home.

Well, of course, this time had to be more difficult. She absolutely refused to keep the oxygen mask on. Every time we put it on, she tore it off and threw it across the room and then the monitor would start beeping because her oxygen level would immediately drop. A nurse would come running in, scold us both and tell her to put it back on. Yeah right. I would then try and just hold it by her face, but she would slap it away. Lou and I were taking turns sitting with her in the bed, trying to keep oxygen on her, but it was a losing battle. Every few hours a new respiratory therapist would show up and try to configure a new way to keep the oxygen on her. A nose cannula with the tips cut off and taped, a mask taped, blow by air that we held to her face. Nothing was working until one brilliant respiratory therapist came up with an idea. A tent that surrounds the bed, like the boy in the bubble, and has a tubing which pushes the oxygen into the tent.

I so wish I had a picture of this to show you. Lou and I would take turns sitting under the oxygen tent with her so she would stay put. Our hair and clothes would get damp, but it was doing the trick. The worst part of this visit was when a doctor showed up on the second day and declared that her pneumonia was viral, so they were pulling the IV antibiotics and she would just have to ride it out. What? Logically I know that antibiotics don’t help with viral infections, but when your kids is super sick and in a hospital fighting to breath, just seeing them get some medications makes you feel better. But he said, “NO”, it was all viral and she would eventually get better.

Oh fun, Lou and I got to spend 8 days under the tent while she got better. We didn’t get to leave the hospital for 10 days because every time she feel asleep her saturation levels would drop and the alarm would sound. The doctors were concerned because of her weight she had apnea and was not getting enough oxygen during sleep. Let me just tell you by day 10, she was ready to murder me and we had to get out of their before she went psychotic, literally. Our only saving grace was the second to last day, they let me pull her in the wagon around the 4th floor and she loves that. We would spend hours and hours walking in circles around the floor, saying hi to all the nurses and visitors.

Finally on the 10th day, the doctor agreed to let us leave if she went home on oxygen for sleeping.. OK, great, we would do anything to get out of their at that point. So on day 10 we got to leave and I got to learn how to run the oxygen machine at home and the doctor wrote us an order for a handicap placard. Yeah, something good out of all this illness, “princess parking” from here on out.

Did you know that you don’t have to pay for metered parking with a handicap placard and you get a discount at most parking structures? Crazy, I know. Always looking at the good and loving the benefits of princess parking.

Comments

As much as I wish I didn’t; I have the “princess parking” placard as well! I use mine only in situations where I am really struggling to walk; I can’t deal with the stares I receive from people looking at me as tho I stole the placard…it’s horrible how I have given power to their stares, their ingnorance. I too am definitely a case of, “don’t judge a book by its over”! Within each post you write I get a touch more strength to just not care about the stares! Thanks Tiff

You deserve that princess parking more than anyone Leanne and you should use it!! Who cares what everyone thinks. The people who know and love you understand what an amazing,strong women you are, and that is all that matters. xoxo miss you…

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hi, I’m tiffani

Nothing fake or phony as I blog about my life as a mother and wife dealing with one daughter's daily seizures, autism, mental delay, violence and numerous other medical problems, while trying to raise the other two in a healthy, happy environment. I hope my blog will make you laugh, cry and think about real life issues every time you read a post.